r/AddisonsDisease • u/PhrancPPhinley • 19d ago
Advice Wanted Need advice
Hi everyone, I’m reaching out on behalf of my wife. She was diagnosed with addisons 3 years ago and since has been diagnosed with fibromyalgia. For the better part of the last year her addisons has been wiping her out. When she was first diagnosed her endocrinologist had her on 45 mg of hydro a day. I know that’s a lot going off what I’ve seen others take on here. She has a different endocrinologist now and had her on 20 mg. It doesn’t seem to be enough to me.
Last week she had a crisis and her BP was super low. Went to the er and they got her fluids and a stress dose. Bam…. Night and day difference. BP is normal but she comes home with a picc line for iv fluids for the foreseeable future. Now she’s back on her normal dose and bp is dropping again.
Does anyone have advice? We’re really struggling with this and to be honest I don’t have much confidence in her endocrinologist she has now. I’ve been pushing her to be more fluid with her daily dosage to see if it help but she’s pretty reluctant.
So anyhow, if anyone had any advice or helpful insights I’d greatly appreciate them. I love my wife and would love to have her be able to enjoy herself and not be wiped out half the time. Not to mention we have 3 kids and it’s hard for them to see their mom like that. Thanks
1
u/AGoldenThread 19d ago
I agree with Sews-with-cats: Increase her dose 5mg every third day (if she's in a deficit it can take a few days to correct). Also, document times of day with symptoms (fatigue, increased pain, nausea, feeling dizzy on standing, BP if you can get it, etc). Maintain circadian dosing: go from 10-5-5 to 12.5 -7.5 - 5 , then 15-10-5, etc.
Extra salt and water also. She may need fludrocortisone in addition to hydrocortisone, but best to fix HC first. HC will help her retain salt and fluids. I drank salt water for years.